Living with a neurological condition like MS, NMOSD, or MOGAD often means living with uncertainty. But understanding the latest research – and what it might mean to you – can help put you back in control.
That’s exactly what Patient Community Day is all about. Now in its fourth year, the in-person and online event will put the cutting-edge research presented at the ECTRIMS/RIMS Congress into context.
Returning for 2025 is the ‘Hot Topics’ session, which will cover the areas of research that people with lived experience have told us they want to know more about.
Even moderator Brett Drummond, founder of MStranslate, will be joined on stage by a panel of world-renowned experts. Neurologists Daniel Ontaneda, Liliana Patrucco, and Mitzi Joi Williams, and researchers Jeannette Lechner-Scott, Olga Ciccarelli, and Xavier Montalban, will all be on hand to explain the science and the implications and take questions.
Medical research advances announced at the congress will be discussed at Patient Community Day, covering a range of topics, including smouldering MS, cognition, and biomarkers.
What is smouldering MS?
Smouldering MS describes what happens when symptoms are gradually getting worse, but the person is not having relapses.
At the moment, scientists are not sure why this happens.
It may be due to persistent, low-level inflammation in the brain and spinal cord. This isn’t the sudden inflammation seen in relapses. Rather, it builds slowly and affects wider areas.
Another explanation is permanent nerve damage that the body can’t repair. This may be driven by ongoing inflammation. Inadequate repair of myelin, which is the protective coating around nerves, reduced energy supply to nerve cells, and age-related decline in the systems that usually help keep nerves healthy, may also play a role.
At ECTRIMS/RIMS 2025, we expect to hear more about the mechanisms behind smouldering MS. There may also be more information on treatments that aim to repair myelin.
Why does cognition matter in MS, NMSOD, and MOGAD?
Cognitive changes affect many people with MS and related neurological conditions. Problems with memory, attention, processing speed, and multitasking are common. They can have a big impact on work, relationships, and daily life.
Nerve damage in the brain is the main cause of cognition issues. Medication side effects, fatigue and poor sleep, emotions and infections can also play a role.
There is no cure for these issues. But research has shown that keeping your brain as active and healthy as possible can help. Doctors often recommend regular physical activity, good sleep, a balanced diet, mental stimulation, and managing other MS symptoms, such as fatigue and mood.
At last year’s Patient Community Day, we spoke a lot about brain health and lifestyle modifications. In 2025, we expect there will be more research on things people can do in their every day lives to manage cognitive changes.
What are biomarkers?
Biomarkers are clues that give doctors a window onto what a condition is doing inside the body. Things like proteins in the blood or signs on a scan. In MS, NMOSD, and MOGAD, where symptoms and progression can vary from person to person, biomarkers are becoming an important tool for diagnosis, tracking changes, and choosing the best treatment.
In MS, one of the most talked-about biomarkers is neurofilament light chain (NfL). Higher levels of this protein in the blood or spinal fluid can show that nerve damage is happening – even if the person has no symptoms. MRI scans are also being used in new ways to spot slow, ongoing damage that may not otherwise be obvious.
For NMOSD, doctors look for a specific antibody, called AQP4-IgG, to confirm the diagnosis. In MOGAD, they look for the antibody MOG-IgG.
Researchers are working hard to find new, and refine existing, biomarkers. They want to make it easier to detect changes early, monitor how well treatments are working, and offer more personalised care. We cannot wait to hear what they have discovered at this year’s congress.
Engage, educate, empower
Patient Community Day will give people a chance to hear all about the latest science, straight from the researchers themselves. Because these are not just academic ideas. They could directly impact your quality of life, treatment options, and long-term outlook.
Register for Patient Community Day 2025
Blog courtesy of contributing writer, Amanda Barrell.